We raise funds for specific research into Batten Disease CLN5.
We’re making incredible progress! First UK family to privately fund research into CLN5 Batten Disease; potentially the first children in the world with Batten disease to be prescribed a drug as a result; over £100,000 funds raised.
In 2009 Freddie and Louie were diagnosed with one of the rarest forms of Batten Disease – late infantile variant CLN5.
Told there were no treatments or cure, parents Sarah and Andrew also found there was no specific research or funding for research into the disease.
In November 2013, scientists told Sarah and Andrew they needed just £20,000 to start potentially critical work so Sarah and Andrew fought back launching ‘Battle Batten’ in February 2014. Seven months later, with huge community support, they had raised enough to become the first UK family to privately commission research into CLN5.
Funds were donated to the Batten Disease Family Association (BDFA), the only UK charity supporting families, raising awareness and funding research into Batten Disease. By the time researchers was appointed in May 2015, the family had raised a whopping £65,000, enough to fund not one but two projects. By September 2017, the research had already made huge strides towards drug and gene therapy:
- Cardiff University have found a drug that could ease and slow down symptoms. If approved, Freddie & Louie will be the first children in the world to be prescribed the drug for Batten disease.
- University College London (UCL) are almost ready to start testing on neutrons to find more possible drugs through their research.
We have supported a third project, buying mouse cells from Finland where Batten CLN5 is most found, so they can be tested at UCL to speed up the last stages of gene therapy research. The whole family’s skin cells will be worked on by a leading stem cell researcher.
Battle Batten continues to campaign. As more research reaps positive results, the more funding is needed for the next phase of research. Andrew and Sarah have personally attended medical conferences in Boston and Amsterdam learning of the options.
In addition, Andrew and Sarah are also raising money for vital equipment for Freddie and Louie and other CLN5 sufferers.
We Need Your Help
- Check out our fundraising pages for up and coming events
- Donate to CLN5 research and equipment
- Help spreading word of the campaign
- Donate prizes, which we can auction or raffle in up and coming event
- Sponsor our Battle Batten Ball
Research into Batten could also help our understanding of other neurodegenerative diseases, like Alzheimer’s and Parkinson’s, for which only palliative treatments exist so far.
“We can’t imagine life without Freddie and Louie. This fundraising means everything to us. We live in the hope that a cure will be found in time, that’s why we are Battling Batten“.